yogini

Yes, it sounds like a doctor who's experienced in treating dysautonomia would be better able to help you.

Has anyone ever tried a TENS unit to help with their pain?  I have a ton of neck/shoulder/coat hanger pain.  You can buy a TENS unit on Amazon for like $25, and they also have more expensive models, but even cheap ones have very good ratings. Wondering if these are worth it and which brands/models?

I have had TENS in the doctor's office when I went to physical therapy years ago for my shoulder and it helped..

HI, i am not sure I understand the numbers you posted. Blood pressure is usually a systolic over diastolic number like 120/80 or 90/60. One single test on any given day doesn't necessarily mean that your medication has stopped working.  You may be having a flare up as we all do from time to time even when we are on meds.  Sometimes the flare ups last for weeks.

There are so many medications and treatments.  You may want to read the diner main page which describes many of them.  The treatment is really individual so the best thing is to find a good, knowledgeable POTS doctor who can help you figure out the treatment based upon your symptoms.

I've tried a bunch of different salts and I didn't notice a difference, lol.

Everyone has a different way of thinking about dysautonomia. In my case it wasn't a simple Imbalance that can easily be fixed through yoga, diet etc. I think of it this way, if you have bad vision, you can eat all the carrots you want and take supplements, you will still need glasses.  If you have diabetes, you have to take insulin, etc. 

You sound just like me.  My dysautonomia got better. I was able to resume work and have a mostly normal life as long as I stay within limitations, The Dinet website has a ton of great information, so I would start there. You can read about medications and doctors in your area. Finding the right medication was what helped me get back on my feet, then I exercised and my recovery built on itself. I no longer need meds. 

Does your electrophysiologist know you have vertigo? If you are diagnosed with vertigo and you feel dizzy, that dizziness might be from vertigo and not POTS.  That could explain why your numbers are fine when you are feeling dizzy.  

Separately, it is also possible to feel dizzy with dysautonomia while your HR and BP are normal.  

 I think many/most of us screw up from time to time.  Each medication is different, so you do have to call your doctor or pharmacist.  You can buy a 7 day pill box - available at any drug store - so that you lay out your medications for the week. That makes it easier to keep track.

I am better now. Looking back I was more scared than I needed to be. It is important to be cautious but also important to push yourself a little, Yes activities triggered my symptoms, sometimes a lot. I didn't wind up in the hospital. Sometimes I had to sleep or rest for a few days. No activity made me permanently worse. And It was always worth it. 

Also practice helps. Go to a neighbors house for 10 minutes or run quick errands to build your confidence.

I don't have trouble swallowing but I think it has come up in the forum. You might want to do some searches.

A lot of times people have co-conditions with dysautonomia that account for the symptoms that can't be explained by POTS or NCS. I think that would be more common than MSA. Also, my understanding is that in MSA atrophy is usually gradual over a long period of time. I think you are seeing a very well-regarded docotor and so you are in the best possible hands to figure it out. Good luck. Keep us posted.

Have you tried compression stockings?

It takes about one month to get adjusted to flornief. If there was a hurricane, it would affect your POTS a lot and I wouldn't assume it was the florinef making you sick. I am generally healthy now. I feel a rainstorm a day or two before.  Can't imagine a hurricane.  Hope you are safe!

What is your blood pressure resting and standing?

There are different opinions on this, but the general diagnosis of dysautonomia is a very helpful start.  Many of the treatments of these conditions overlap. When I got sick I kept a diary of my HR and BP for several months.  If you read  the DINET main page, with this info you will get a better sense of which category you fall into and which meds might help your specific issues.  If you have high BP you might need a med which lowers (and doesn't raise!) BP, etc.

My general advice is figure out which foods work for you, that you like the taste of, that don't make you sick.  Read packages of foods you like.  Pick the ones that are high in sodium.

I need a TON of salt to function in my worst times. I don't love processed foods (which are the ones that have the most salt) - for multiple reasons. Many are processed and high in calories.  I like carbs, but when I am sick, too many carbs - chips, pretzels - make me worse. The sugary drinks with artificial colors and corn syrup - though they work - are also a turn off. And I really don't want to change my food to add salt.  When I tried salt pills, I threw up.

For me, the ONLY way I can get to the POTS recommended salt levels is to drink broth.  After lots of experimentation, Better Than Bullion (organic) is the brand I use.  I buy it at Whole Foods. It doesn't taste great, but not awful either.  

Hi, not sure where you are based, country/city?  Generally a cardiologist or neurologist might know about dysautonmia.  There is great info and also a doctor list on the DINET information page.  Doctors who aren't on the list often don't know much about our condition....

Have you been diagnosed with both dysautonima and an ear condition?  i got misdiagnosed with an ear condition but turns out I had POTS only.  

You may want to search on the forum.  This topic has come up many times.  Most can safely fly and most who have posted this question have done fine on their trips.  The key is too be extra prepared - have everything you can need with you on the plane - medications, water, etc - and be well-rested.  Most do better than expected.  It isn't unusual to crash after a trip.  But it is usually worth it.

There are a few ways I have dealt with this.  First, my personal (non-medical) opinion is that you don't need to do cardio.  And don't be in a rush. The exercise protocols are very harsh - too harsh - for many people.  Build up. If you are getting sick, walk, stretch, do lying exercises on the floor. Do seated exercise. Practice standing if you can't stand for long. Build up. If you are on a bike and it is making you sick do 5 minutes or 1 minute.  Your body might get adjusted and be able to build up. Experiment a bit. Stretch, warm up, cool down. Ask your doctor if you can wear compression hose or take extra meds. If you play around a bit, there is more of a chance to find a way to make exercise work for you. And, by the way, when I found exercise that "worked" I was still tachy for hours after.   Some of it is just a part of the condition.  You just have to find what is bearable and keep pushing forward. Not easy, but worth it I promise.

HI, need some more background about your diagnosis, symptoms and doctor's advice.  But it isn't unusual to have a rapid onset.  And actually people with rapid onset have the best chance for recovery.  It's scary, and it takes a while to recover, but the best thing to do (since there isn't any other choice!) is to read up and just keep plugging forward.

Medications have bene invaluable in getting me back on my feet.   I wouldn't discourage anyone from taking meds, but it is very important to read the side effects and interactions.  POTS it is also important to research the impact of these drugs on POTS patients, since there can be additional side effects.  A natural supplement has the same potential for side effects as any medication and needs the same research, plus natural supplements aren't regulated or studied, so you can't be sure what's in them.

IF putting your feet up helps, have you tried compression stockings?  They help with pooling

I agree with TrainBoysMom.  Usually when there is a change in symptoms, there is a trigger.  I wonder if it's a medication and not really a POTS flare up.  i would read up on the side effects of the meds you took or are taking and also search the forum to see if other people have had bad reactions.

On 4/15/2017 at 5:58 PM, Finnmin said:

Thank you for your replies! So many on this forum are seeking for advices on how to deal with dysautonomia, I wish that my husband and I could offer at least one bit of helpful information, but unfortunately NOTHING we've tried has helped him. It's so frustrating to buy new aminoacids with high hopes, only to find out that there won't be even a hint of an improvement. I hope that you have had better luck with supplements, they must do something for someone.

@BuffRockChick: my husband is just like that, he gets up and is suddenly so irritated, he doesn't even realize the change himself. I ask him to lie down and soon he's calm again. We have suspected borderline personality disorder too. But before POTS it was under control, now those raging stress hormones make him more sick. 

Thank's for mentioning the compression calf sleeves! I ordered some and he will try them to see what they do, we'll be careful with the hypertension issue though. Good luck getting a right diagnosis at last!

 

@yogini: thank you for the hint to take the beta blocker at night. I suggested it to him on intuition when he wanted to quit the bb, but he's too oldfashioned and believes that it would be dangerous. I'll talk to him about it again!

Exercise makes him more sick during the activty, but afterwards, after lying down a bit, he's back to his usual fatigued self. What we have learned the hard way is that he must keep moving: without exercise he'll be badly deconditioned within a week, without regular exercise even the slightest of excertion makes his heart pound or skip beats. What I wonder is that why can't there be any improvement, he can't build up tolerance to exercise, he can only keep the arrhytmias away.

@haugr: thank you so much for replying, we will definitely talk about clonidine and losartan with the next doctor we're going to try next week! Do you have a post somewhere telling about your POTS onset? Is it possible for you describe how/if testosterone replacement therapy helps your POTS symptoms? My husband was prescribed testosterone gel, but he refuses to use it, not believing that it would help his symptoms.

We will definitely study the angiotensin research links you provided! How close to your pre-POTS health level do you think you are today?

@TCP: thank you for sharing your story, you've had a lot to deal with for a long time. We haven't tried different diets yet, it's definitely something he must try, since we've tried almost everything else.

I have learned to fear the name of Epstein Barr virus after all that I've read about it. My husband was tested too soon for mono to know if he had it, and too late for EBV to know if his high igM titer for EBV indicates a previous infection from his past, or was it infact the trigger to his POTS.

More questions keep popping into my head, but I'd better search the forum if there are already answers out there.

 

Hi Finnmin, I would definitely ask your doctor or pharmacist before changing the time of day to take the medicine.  You'll get some wonderful advice here on the forum, but always best to consult your doctor before making any changes.  I believe they would easily explain any of your husband's concerns.   

If you take tylenol in the morning or at night - it's the same medicine, it should not be any more or less risky based upon the time of day.  Beta blockers are a bit more complicated than tylenol, but it is the same concept.  It should not be dangerous just because you rake it at night - it might be a but weaker in your system by the time you wake up - the reduction in heart rate may be less, but there will also be fewer side effects. As I mentioned, as your body gets used to the beta blocker, over a long period of time, like a few months, the side effects will often start to wear off a lot.  

Again, your doctor is the best person to talk to.  But the reason I think that a beta blocker is worth retrying is that your husband has both high HR and high BP, and both symptoms are treated with beta blockers.  Many/most of the other dysautonomia drugs increase blood pressure.

On 1/22/2016 at 1:49 PM, aaron.parks said:

Hi all,

Here are a couple notes on the Fitbit from my experience with it:

I have been using the Fitbit Charge HR continuously for two months or so, and I do like it a lot. But based on what I've seen, it seems the heart rate feature is very "laggy", slow to respond to changes in heart rate. For me it can take several minutes to adjust to a change in my heart rate, especially if my posture has shifted (I think it's sensor has to recalibrate when blood pressure in the wrist changes). Maybe this is fine for a non-POTS individual doing some cardio exercise over 20-60 minutes, but for me, my HR can vary widely from second to second if I'm walking around. So much of the time the recorded heart rate from the Fitbit is a good 30-40 BPM lower than my actual peak heart rate.

On the other hand, I think the Charge HR does a good job of tracking resting heart rate, especially while sleeping, which for me does seem to be correlated to my general well being. Step tracking, while not quite as accurate as a normal pedometer, is still really useful for setting daily activity goals. The sleep tracking has been accurate for me in terms of hours of sleep per night, but it doesn't give much more insight than this. You can also set silent (vibrating) alarms, which are good for medication reminders or exercise reminders, etc.

I compared the Charge HR to a (far less expensive) chest strap heart rate monitor, which never misses a beat and responds very fast to heart rate changes. The issue with the chest strap was that it's really uncomfortable to wear, so I had modified the monitor to attach to a couple of normal EKG sticker pads instead (far more comfy). Unfortunately there doesn't seem to be a product already set up like this outside of very expensive holter monitor type devices...

Aaron

As a woman, it adds a little bit of extra discomfort to more discomfort that we are already wearing